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Forum Name: Pediatric Topics

Question: Illness Unknown, Please Help!


 bass - Tue Dec 06, 2005 12:48 am

I would like to ask a question concerning my daughter. She is 12 years old, has been sick since the end of September, and missed at least 8-10 weeks of school. She started out with a sore throat that wouldn't go away, even with antibiotics. She then started having pain in her upper chest and shoulders. Her voice sounds like she has laringitis, but there is nothing wrong with her throat at all. She has had mononucleosis sometime in the past, but not now. She sometimes runs small temperatures around 100-101. She has had cultures for strep, nothing found. She has had a scope down her throat into her stomach, normal results. She has had a scope down her nose into her throat, normal results. She has had a catscan of her brain, and xrays taken, normal results. She has had an eeg, normal results. She has had a MRI of the brain, normal results. She has had numerous blood works done up, including systemic rheumatic diseases, lyme, epstein barr virus, hepatitis, cytomegalovirus, lupis, thyroid, sugar levels, etc. All blood workup was normal, with a very borderline anemia. She also had a xray of her chest, which was normal. She has seen a rheumatologist at a adolescent clinic, a ENT physician, gastrointerologist, psychiatrist, and her primary care physician (pediatrician). No one can figure out what is wrong with her. They say that it could possibly be chronic fatigue, and anxiety disorders. Her primary care physician put her on 25 mgs of Zoloft per day, which has increased her ability to stay up for the past 8 days on the med. Her symptoms that started on the second week of October have gradually become severe, which is a severe case of amnesia. She doesn't remember some family members (such as aunts, uncles, etc.), friends, and other people including her physician. She doesn't remember how to do mathematics, including counting to 10, and her spelling has letters doubled up. (example: throat hurts, spelled throaeat huratese). She was an honor roll student last year, and did fine the first three weeks of school this year. Things are just progressively getting worse in her ability to remember things. She says that sharp echoing noises bother her ears, so she cannot go to the mall anymore, which was one of her favorite things to do. She cannot stand blue and green lights, and loves Christmas lights, but they hurt her eyes. Her vision has changed since June, and so has her hearing. Tomorrow we are due to take her to a neurologist, and are hoping to get some answers. We live in a more rural area, so don't have many places to turn for information. For myself, this has been a very difficult ordeal watching her just go downhill, and feeling totally helpless in being able to help her. Her older sister who is almost 20 has severe Cerebral Palsy, with a collapsed lung, feeding tube, and a harrington rod in her spine, and requires 24 hour total care from the state. My ability to watch my younger daughter go downhill scares me very much, because I don't want her to end up severely disabled, and not be able to have an independent life. Can you please help me? Thank you very much.
 Dr. Heba Ismail - Fri Dec 09, 2005 7:46 am

This is very concerning.
Conditions in which there is a deterioration in previously acquired motor or mental functions, are known as 'neurodegenerative disorders'. But MRI findings are diagnostic.
May be the MRI was done early in the disease course and needs to be repeated.
I cannot think of anything else, but the remote possibility of a brain tumour would also be excluded by a follow-up MRI.
Please keep us informed with the updates.
 bass - Sat Dec 10, 2005 2:18 pm

Dear Dr. Ismail:

Thank you so very much for replying to my message. My husband and I appreciate the help very much! We took our daughter to the neurologist who had read the MRI of the brain she had done on 12/06/05. This MRI was completed on 11/09/05, and the appt at the adolescent clinic with the rheumatologist in Seattle was on 11/17/05. Her memory loss began approximately 10/10/05, and the illness began around the end of September. The neurologist could see that there were a lot of difficulties in her memory, but didn't think any of them were related to a neurological problem. He said that her MRI came back normal, and although he would recheck the MRI itself, didn't think that was the problem. He did want to help, and try to figure out what was wrong, and said he would look into it, and we probably wouldn't hear anything for a couple of weeks as it would take time for him to go back through it. She also had an appt with her pediatrician (PCP) on 12/07/05. Her pediatrician(PCP) says that it is believed at this time that our daughter has a conversion disorder along with chronic fatigue, and that this is the diagnosis unless something changes with what the neurologist says or the pediatric specialist. She(PCP) wants our daughter followed by the developmental behavioral pediatric specialist, and her Zoloft managed as well. Our daughter's pediatrician (PCP) increased her Zoloft from 25 mgs to 50 mgs per day. Our daughter's pediatrician (PCP) also wants her to be counseled, and followed through with physical therapy as well. She (PCP) wants her to return to school slowly to begin with, but to be increased to full time as her condition tolerates. She(PCP) said that school is known to be beneficial to patients who have chronic fatigue, and conversion disorders.

I do notice that her energy level has improved so much by the Zoloft. She was able to go into a mall the second day upon the Zoloft increase, which was 12/09/05. This is the first time since 10/23/05, that she has been able to go into the mall, which made her very sick on the October date.

My question is: Does this sound like a reasonable diagnosis, or does the possibility of a neurodegenerative disorder still exist? Should a follow up MRI still be performed, and if so, I wonder how I should go about asking the physician for one? Our daughter's pediatrician (PCP) is pretty set on not involving any more physicians or clinics in our daughter's case anymore, as she feels that our daughter has had a full evaluation already completed at this time with all test results normal. She said that the anemia was very borderline, and that could be the results of our daughter's menstrual cycle.

Thank you very much for all your help, and it is appreciated very much!
 Dr. Heba Ismail - Tue Dec 13, 2005 1:31 pm

I am sure your doctors know what they're doing quite well. You must remeber that they definitely have a better chance at evaluating her condition since they can examine her thoroughly.
If it's just a memory loss and fatigue with no neurological affection, then the possibility of neurodegenerative disease is now remote.
It's good to know she's improving on medication, so let's wait and see how things go.
 bass - Wed Dec 28, 2005 4:04 pm

Dear Dr. Ismail:

Our daughter is still on Zoloft at 50 milligrams per day, and she will see a pediatrician who specializes in diability and mental health related issues. She is having her hearing evaluated, and also her vision as well, since her school recently tested her, and has seen a severe change in both. We are having a new doctor take a look at her as well, and he has ordered a lot more blood workup done, and is sending them off to California, as well as other labs for evaluation. The Lyme test he sent off to California, and the results will be in around next week. Her thyroid test came back, and he said that it shows she has a thyroid deficiency. He wants me to monitor her temperature with a Basal thermometer morning, and evening until we see him on January 12th. She is still about the same, with some days being better than others. She went to a Christmas Party one evening with a lot of excitement, and the next morning could not recall any of the last evening's events. She does not appear to be depressed, and is able to make fudge, did the entire family decorating, and enjoyed Christmas very much! I cannot understand if this is a somatoform anxiety disorder called conversion disorder, why doesn't she show any signs of anxiety related issues, or depression? She seems to be happy, unless she gets exhausted and worn out physically. I have also asked her pediatrician about hypnotism, as I read on the internet that this is a good tool to use with conversion disorders, and have not heard back from her yet about this. I really appreciate your help on this, and am sorry that it took a while to get back to you, as it has been the holidays and have been busy.

Thank you !
 Dr. Heba Ismail - Fri Jan 06, 2006 8:33 am

Although I do not generally encourage changing doctors in complicated cases, but in your daughter's case, I believe it was a very wise step, as her case is rather confusing.
Please keep us informed with the updates so we can be of help.
 bass - Mon Jan 30, 2006 12:20 pm

Dear Dr. Ismail:
Our daughter was diagnosed with Lyme disease earlier this month. The doctor who we took her to was more of a homeopathy type of physician who did a lot of blood testing, such as a hair analysis for heavy metals, a lyme test from Igenex Labs, hormone profile, thyroid, sputim test, and also a urinalysis. The results from this found that she was low in a variety of items, and has been put on a variety of drugs. She is now on Armour Thyroid meds, cortisone, is now on Tindamax, an anti-infective drug to fight the Lyme disease. Although our daughter had been tested twice before for Lyme, they came back negative. The new test showed positive on a IGM Western blot. We have put her on the drugs per doctor's orders, and she has improved a lot. She is getting counseling, and last week we started a neuro-psychological evaluation to be done by a psychologist in a nearby town that has a vast amount of knowledge of Lyme disease. She is scheduled to start physical therapy also, and we are hoping that this will improve her problems. I read an article from Reader's Digest, which said that Lyme disease is one of the top ten diseases that are most difficult to diagnose. I am hoping that there will be more information available to the general public, and to educate professionals about Lyme disease. There is a website called Turn the corner.org which gives a lot of information about Lyme disease, and that it is all across the nation. I am amazed by all the information that a person can receive about this disease. Everyone is at risk, if they are unprotected against ticks. We went to a Lyme support group in our area, and have been told that it is now being found that mosquitoes can give Lyme disease as well.
I am very glad that we now know what is medically wrong with our daughter. We now need to focus on getting her treatment which will help her, and hopefully she will regain her memory. She is joining an adolescent support group online, and I am hoping this will give her some added support that she will need.

Thank you very much for all your help so far, and I will keep you updated on her condition.
 Dr. Heba Ismail - Thu Feb 02, 2006 2:35 pm

This is great news. It's relieving to know that you've finally reached a diagnosis and on the right track.
Thank you very much for keeping us updated, and please keep us informed, as I'm sure many other visitors to this website may find your experience very useful.
 bass - Fri Feb 03, 2006 2:59 pm

Dear Dr. Ismail:

I thank you for your reply to my questions. I am hoping that there can be a lot more education available to the medical professionals and public about the treatment of Lyme disease. There appears to be two different approaches to the disease, and I got this information from a National Lyme organization. There are some websites that I thought would be helpful information to anyone, and I wanted to give them to you. They are: http://www.lymenews.com , www. lymenet.org , http://www.ilads.org ,www.lymediseaseassociation.org , http://www.lyme.org , and anyone in Washington State there is http://www.walyme.com. Some states have support groups, and also websites. There are places for children to get support as well.

Thank you again for all your help, and I will let you know how my daughter is doing.
 bass - Thu Feb 16, 2006 1:58 pm

Dear Dr. Ismail:

I wanted to update you on my daughter's condition. She had a MRI of her spine a week ago. We were contacted by her pediatrician with the results, and there was arthritis found in her spine, as well as some issues with her disc by her upper neck. This explains the pain she has had in her neck, and back. She apparently has some beginning problems with Koliosis also. I asked the other doctor that we had an appt with two days ago, if this could be caused by the Lyme. She showed me where that the changes occurred after December, and this was most likely from the Lyme disease. We are taking her to a Lyme specialist in California who also sees some other people we have met through a Lyme support group. I am hoping that he will give us some valuable information that we need. We are also taking her to a children's hospital for an evaluation. This seems that her medical help in California will be ongoing for quite a while. It is a long ways to travel for help, but we hope worthwhile for the course of action it needs.

Thank you!

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